COVID, Nursing Homes, and Death: A Conversation with Margaret Morganroth Gullette

Truth to Power is a regular series of conversations with writers about the promises and pitfalls of movements for social justice. From the roots of racial capitalism to the psychic toll of poverty, from resource wars to popular uprisings, the interviews in this column focus on how to write about the myriad causes of oppression and the organized desire for a better world. This interview has been edited for length and clarity.

Steve Dubb: What led you to write American Eldercide?

“Medical ageism was…a matter of life and death.”

Margaret Morganroth Gullette: On March 11, 2020, I came back from a conference in which I had been the speaker, and everybody had hugged me who wanted to, and then the World Health Organization announced that there was a global pandemic. You may remember how frightened we all were. I was paying attention to COVID every day.

And I happened to notice that guidelines for access to ventilators were being promulgated by hospitals and bioethicists. I read those guidelines. And they excluded older adults from access to ventilators. So, I wrote my piece for the Los Angeles Review of Books.

That was ageism, pure and simple. It had just infiltrated the medical world.

Medical ageism was going to be a matter of life and death. It was the only exclusion that was legal. You couldn’t exclude women. You couldn’t exclude people of color. You couldn’t exclude people with disabilities. You could overtly…exclude people over a certain age. That’s what got me started.

But it wasn’t long before the mortality data started coming out about the nursing homes. And I realized that something like ageism was going on in the nursing homes. But it was probably what I like to call compound ageism, which means it is probably an admixture of sexism, racism, classism, and certainly ableism.

So that was the start of the book. I didn’t know it would be a book. I just kept writing my short pieces for the mainstream [and it grew into a book].

SD: You write about how ageism is “almost always braided” (20) with racism, sexism, homophobia, and other forms of discrimination. How does ageism show up in society outside of nursing homes?  

MMG: The first story was about who was excluded from the intensive care unit. Medical ageism is crucial. A lot of other people will tell you [about] the trivial everyday ageism story, that their doctor doesn’t pay attention to them. If they come in with a younger person, the doctor will not listen to them….That kind of avoidance leads to neglect, which then leads to death.

There are stories about how medical professionals were supposed to refuse to take older people. Hospitals offered what are called do-not-resuscitate orders (DNRs).

There is a famous California story, and it was before COVID, in which people who came to hospitals, after having been resuscitated, were given do-not-resuscitate orders. You are not supposed to be given do-not-resuscitate orders. They require consent. It’s a legal matter. But if you are given one, you get less treatment in that hospital. People who got the DNRs and who got the lesser treatment were likelier to die.

[Medical] residents read a [novel] called The House of God. It’s an old book, but they still read it. It tells you how you are going to survive your medical training or residency.

One of the words that they learn there is “gomers”—get them out of my emergency room. And the “them” is old people with multiple morbidities, meaning you have a chronic illness—one or two or three. Or you just look frail.

These residents are not taught to take care of them. They are taught to be afraid of disability.

Economists are very interested in the productive economy. And older people who are no longer in the workforce can be considered unproductive simply because they are not working anymore.

This, of course, counters anything that you might call pro-aging or “love your grandparents.” But it is very definitely a way of ignoring anybody who is, by definition, no longer in the [productive] economy.

SD: In the book, you outline the “hybrid public financing” (33) of nursing home care. Could you describe this system and explain how it impoverishes so many?

MMG: Congress decided that there would be two healthcare systems for older people. One of them is Medicare. Everybody knows something about Medicare, and it is for the middle class. You pay into it, and you’re supposed to get out what you put into it. That’s the productive economy.

But partially because it was Dixiecrats (Democrats from the South) who were forced to think about old people, and they thought old poor people were going to be Black, they had a separate system for poor old people that is called Medicaid. Medicaid also has people on it who are not old, but I am focused on older people.

That’s the first part of what made [public financing of healthcare] hybrid…They are both run out of the federal government…out of one office. That is the Centers for Medicare and Medicaid [CMS].

CMS is run out of Washington. But not entirely. Every state has its own office that handles Medicare and Medicaid, or maybe several offices. Different states do this in different ways. The state legislature has to put up [matching] money for Medicaid.

But you can be middle class and wind up in a nursing home that is run by a private equity firm or by a real estate investment trust…and you could lose your money.

I tell a story about a woman I call my Aunt Vera. Aunt Vera had a very good job, an elementary school teacher in a good public school system. She had good savings. She had a pension, and she had good social security. She also had a husband with Alzheimer’s, who ran down the family savings in old age. So, by the time she needed nursing care, there was not the money. And she wound up in a nursing home. She had no intention of doing this. It could not be a private pay. She had to sell down all her other assets.

But I think about Aunt Vera when I think about the people who were [nursing home] residents in 2020. I think about being in a room, in a space that is 90 square feet, which is all you get in Massachusetts You could be separated from your roommate with a plastic shower curtain, not even a plastic shield. Those are the circumstances that nursing home residents were living in. That begins to explain from the bottom up why so many of them died.

SD: Your book focuses on the 1.4 million Americans who lived in nursing homes during COVID, of whom an estimated 112,300—or 8 percent—died from COVID in the first 10 months of the pandemic, which is more than two dozen times the ratio of deaths on the outside. What were the primary drivers of this extraordinary death rate?

MMG: The Centers for Medicare and Medicaid Services had to look in March or April of 2020 like they were doing something. Medicaid is a small part of what CMS does. It’s mostly aimed at getting the checks out to the people on Medicare. But it had to look like it was active but not actually promulgate any new regulation.

The compromise was such an evil compromise. What they said was that we are going to waive the rules that inspectors have to go into these places. They don’t have to go in if they don’t have personal protective equipment or PPE.

But of course, in many places, there was no PPE. So, if you were the owner or a manager of the home, you could say, “No PPE, no inspection.” They weren’t even collecting data on deaths—not until May 21, 2020. That’s why we don’t know how many died. That was one part of the evil.

The other part was that the nursing homes were not prepared. At the national level, the stockpile had been reduced by many presidents. The stockpile is where you keep PPE in an emergency like this. Not only was the stockpile not filled up again, but there were other calls on it….The most important reform we could have would address understaffing. Understaffing was endemic before COVID.

Owning a nursing home is [also] a very lucrative business if you are in it for profit-making. One of the proofs…is that when all of these people were dying in nursing homes, there was a big uptake in purchasing nursing homes. Why did it look like a good deal?

Well, you could get waivers of liability from many states for COVID deaths…including Massachusetts…for owners of nursing homes for deaths in nursing facilities.

You couldn’t make this up. Everybody that I cared about was dying and in the nursing home business, these were halcyon days.

SD: Going forward, how can better health outcomes be achieved in nursing home facilities?

MMG: There were about 1,950 places out of 15,400 that had no deaths during that horribly scary period. That is why some of the people I quote said they felt safe, and they felt lucky to be protected.

They were small, mostly nonprofit, sometimes they were run by religious organizations—Baptist, Catholic, Jewish. Many of them were unionized. Unions do better with staffing ratios. They do better by their employees. So, you don’t have the absolutely horrifying turnover levels that you have in some of the for-profits.

“If you were the owner or a manager of the [nursing] home, you could say, ‘No PPE, no inspection.’”

Of course, if you have turnover, the nursing aides never get to know the residents. So, they never have the personal relationships that make living for a long time in a nursing home even a pleasure. You have companionship. They knew you when you had less cognitive impairment. They know your history. They had infection protection.

Going forward, what [should be done] to improve care? Single rooms. That was actually on the legislatures’ shopping lists in many places. We did not get it in Massachusetts. We got a new regulation about double rooms.

Staffing ratios: This did happen. There have been a number of congressional hearings about COVID. President Biden and his Health and Human Services people must have been listening. They decided to promulgate the first staffing standard in the history of nursing homes. It is 3.48 hours per person per day.

Anyone who thinks this is a lot, they are wrong. Massachusetts has a higher standard, 3.58 hours per person per day, and it is still not enough. We have a much sicker population of people in nursing homes—people with mental illness, with multiple morbidities. When you raise those minutes, you improve health rates. Six minutes a day makes a difference. Twenty minutes a day makes a tremendous difference.

One other thing: I have been supportive of [Massachusetts] Senators [Ed] Markey’s and [Elizabeth] Warren’s efforts to rein in private equity. Get private equity out of the healthcare field altogether—but certainly, get it out of the nursing homes.

Senator Warren, at a hearing in 2024, spoke for the reformers when she said, “During the pandemic, private equity owners and homes had a 40-percent higher COVID mortality rate. I’ll say it bluntly: Turning private equity loose in our healthcare system kills people.” Senator Markey, at hearing about his Health Over Wealth Act, remarked, “What they did was immoral, and we need to make sure that it becomes illegal.”

SD: One argument you make is that the US government’s response to COVID was shaped by an “ageist, ableist” narrative (59) and that if children were the most affected, the response would have been different. Could you expand on this?

MMG: We just need to look at the polio epidemic in the 1950s before there was a vaccine. There was no argument about whether the schools should close, or the playground should close, or the swimming pool should be closed, or the children should be kept safe. It was about children. Children were going into iron lungs. Children were dying. There was no division in the country over what should be done. The government said what should be done, and it was done. Nevertheless, it was a tragic situation before we had a vaccine.

“The most important reform we could have would address understaffing.”

What you look at [during COVID] is what [the] government does in the interval before there was a vaccine. No production of PPE. No regulation about proper staffing. All of those things didn’t happen.

I think classism was the main issue: ageism, ableism, and classism. The people “known” to be in nursing homes are poor people. That’s not actually true. At any particular period in nursing homes, about 30 percent of the people who are there are actually in rehab, if it is a skilled nursing home facility. They are Medicare patients, and they expect good treatment. Everything is paid for better for them than for the Medicaid residents who are in long-term care.

But if you’re in a nursing home and it is understaffed, you, the privileged Medicare patient, are going to get the same poor care. If you need to be turned in your bed or have your wound care checked three times a day or four times a day, that may not happen. You may get sepsis, just like the long-term care patient.

The idea that Medicare is going to save you because you are a middle-class person is a canard.

SD: What can nonprofit leaders, workers, and movement activists do to build a healthier nursing home sector?

MMG: This coalition (Dignity Alliance Massachusetts) that I joined about two-and-a-half years [ago] talks to [and] advocates for laws in Massachusetts that will improve the conditions under which these categories of people live. They lobby their state legislature, and they are good at it, and they are indefatigable. If you are lucky enough to have that that kind of a coalition like that in your state, join it.

If you don’t have a coalition like that, you can probably support something like the Center for Public Representation. It works with Justice in Aging, which is a group in San Francisco that is on the right side of every congressional bill and works to end poverty among old people. I mean there are many groups that you can simply join.

That is the most passive form—just joining a group and giving them some money. I like the more active forms. I like it if you write letters to the editor….You can write op-eds about conditions in your state or your city. You can pen confessional pieces about how a relative of yours suffered in nursing home facility. You can advocate for getting more people out of nursing homes.

SD: You contrast the current era of “scarcity, managed care, and undertreatment” with an alternative of “Medicare and long-term care for all” (159). How can the United States achieve this vision, given the powerful forces arrayed against it?

MMG: It is all about politics, isn’t it?

There is a model for long-term care…in Washington state. It is very modest. The Washington model is a model like Medicare. It is a pay-in model. You are entitled to it because you paid into it.

I like the Washington model. Massachusetts has put in some money to think about how it could be brought to this state. Every state and DC should be thinking about how to do it. It is not ideal, but think about what you can do in your own home state.

SD: You write that COVID has “traumatized many Americans and atomized us” (279). How should society collectively respond to that trauma? 

MMG: Maybe it’s too simple, but I don’t even think sociability has come back in the same way. People I know don’t party as much as they use to. We don’t go out to movies or theater as we used to. People are still afraid of the crowd.

You can go into the crowd and wear your mask. These are small things, but they are community-based activities. If you go to legislative hearings or town halls, those are twofers—you get some sociability and collective action.

The individualistic response is wellness: I go to the gym; I diet….The individual answer cannot respond to collective trauma and a change in habits as deep as this.

We need a far more robust response to our own collective fear of dementia. I think we have to learn person-centered care. We have to learn how to talk to people who have cognitive impairment. We need to be less afraid of people with disabilities. We have to be less afraid of old people.

SD: Is there anything else that you would like to add? You write about memorials for the people who died during COVID in nursing homes in the book, for instance.

MMG: I would like to say something about the [idea for the] memorial [for the more than 200,000 nursing home residents who died during the COVID pandemic]. People in nursing homes are the only people in the country for which the government makes itself responsible for their safety and their lives. That is statutory.

They were abandoned in 2020. Things are getting better in some places but not in other places. It is very uneven. We need to reflect on the abandonment. And with what’s wrong with a society that left them so undefended.

A monument does that. It means you think about responsibility for the most vulnerable. It means that we honor them.

A memorial should be beautiful. It should be made of rich materials. It should have their words and their names. We must name the names. We must take responsibility, collectively, as a society. Not just because the government passed these laws, but because it’s an obligation to take care of our elders and most vulnerable.

As we move into a society of scarcity, there will be many arguments for reducing the safety net. We will be told we cannot afford them. We have too many old people. They are too old, too needy.

We must toughen up every ethical standard that we want to live by and make them explicit. We won’t exclude people. We will include these people. We will honor these people.